The New Normal

ADJUSTMENTS
Once you are a pre-dialysis patient, some nephrologists recommend limiting your protein intake. This may be a challenge for some patients.  If and or when you start dialysis, you must increase your protein and limit your fluids, another adjustment. If you get a transplant, there are many medications to take, another new normal.
The long term use of medication, whether a dialysis patient or a transplant patient, can take a toll on our bodies.  In my case, years of medications for Lupus and my transplant have affected my bones and skin.

EDEMA
I was diagnosed in 1988 at the age of twenty with Lupus Nephritis. This eventually caused my kidney failure. For me, pre-dialysis was a bumpy road. I had Nephrotic Syndrome at that time, which caused significant edema throughout my body.  Over time, my legs became so heavy I had to use a wheelchair. If I wanted to go out and about that was my only option. It amazed me how much people stared at me, and how many times people just walked into me. I gained real insight into what wheelchair bound individuals live with.

ORTHOPEDIC ISSUES
Healthy kidneys help keep your bones healthy.  They do this in two ways:
•    Healthy kidneys keep the right amounts of phosphorus and calcium in your body.  When your kidneys are not working, too much phosphorus can build up in your blood.  This can cause your body to pull calcium from your bones, making them weak.
•    Healthy kidneys also help your body use vitamin D.  When your kidneys are not working, your body may not be able to use vitamin D like it should.  This can also cause your bones to get weak.(1)

I have suffered many bone breaks in my feet due to my 24 years on prednisone. For me, spontaneous breaks in my feet are common.  I have worn casts for some breaks, and used boots for others. Each time I suffered a break, I used crutches for weeks at a time.

Other patients may need hip or knee replacements due to prolonged steroid use. Getting the proper diagnosis and treatment is imperative to proper bone healing. Surgery, physical therapy and the use of a cane, crutches or a walker are all part of the package.

Some patients feel they are too young to use a cane or walker. With kidney disease we know that being an active participant in our medical care is imperative.  If we have a kidney transplant, we take our medications religiously.  If we go to inpatient hemo dialysis, we know that to stay alive we must follow our treatment schedule. If we are told to use durable medical equipment, we do so as instructed. Adhering to the prescribed regimen is a must.

SKIN
Skin cancer can be a common side effect of transplant medications. As a former competitive swimmer and sun lover, years of medications have taken an added toll on my skin. An active role in my healthcare, for me, means visiting my dermatologist four times a year. I have my entire body checked to see if any of my moles and or freckles have changed color, shape or size. Many times, I do have skin cancer.

In 2009, I had a serious infiltrated basal cell carcinoma on my nose. I lost the bottom half of my left nostril. After many reconstructive surgeries, I sort of have my nostril back. Through the year-long process of rebuilding my nostril from my ear cartilage, I was self-conscious in public. I even contemplated not having the surgery at all. I am quite vain.

My dermatologist called me the night before the surgery and spoke with me for one hour. Knowing deep down that the cancer could spread anywhere in my body, I knew I had to go through with the surgeries. I now wear skin colored tape over my deep scar, which gives me a bit more confidence. Hey, whatever works!

Accepting the reality of my lifelong health issues is still a process, even after 27 years. Do I like taking medicine? No. Do I like having arthritis everyday? No. But ultimately I have learned to continue on the uphill path. I work year after year, hand in hand with my doctors, to keep my life moving forward.

About the Author
Julie was diagnosed with Lupus and CKD in 1988. During the past 31 years she has done incenter hemo, home hemo (Nxstage), and was transplanted for 17 years. She has volunteered in the renal community in many capacities. She lives with her husband and cockapoo in S. Florida.

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